When the Most Caring Thing is Letting a Patient Die

by Matthew Demarco, MD

I was hurriedly rounding on my eight patients early one morning last month when I met one of my new patients who had been admitted overnight. She was a pleasant 85 year-old woman with severe dementia who had been admitted for a Hgb of 4.5. She had received 2U PRBCs and now we were searching for the elusive cause of this persistently low Hgb. However, as I met this patient she was agitated, ripping off her cardiac monitor leads, and confused about why she was in the hospital. I paused at that moment as I stepped out of her room and asked myself: What would be the best care for this patient? How could I align my care most with what the patient would want, with care that would give the patient the best quality of life, and care that would allow the family to enjoy time with the patient?

This is a crucial crossroads in the care for a lot of our patients. It begins at the point early in the hospital course when we can start a conversation with the patient, the family, or the health care proxy. Essentially, starting a conversation with whoever will be making the medical decisions going forward about quality of life, goals of care, and what that patient actually desires. It seems far too often we become so fixated on fixing the medical issue that we don’t count the costs for the patient. In the medical profession towards the end of life we struggle to stop and ask the patient what they want, especially when it clashes with the medical treatment we can offer. We struggle to stop treating, and admit that the best treatment we can offer may be having that patient at home with family to enjoy their last few months of life instead of making trip after trip to the hospital for treatments that are simply plugging holes in a dam that is about to fall apart.

For this patient specifically we could have pursued a full anemia workup, endoscopies, imaging, etc. However, even if we found something that required more treatment, would it really be worth treating? Was extending this woman’s life by 6-12 months worth it to the patient and her family? This is why it is so important to have these conversations early in the hospitalization because if we don’t know the patient’s goals of care then we start to make assumptions based on our beliefs, preferences, or desires, rather than the patient’s. So, if I know a patient’s goals of care from the beginning I can make decisions appropriate for that patient. In this example, I called the family immediately after rounding on the patient, and we discussed the potential workup that could be done. The family did not believe the patient would want more workup, or that she would be able to tolerate it. The decision was made to send the patient home on hospice so that she could enjoy her remaining time in a comfortable environment with the people who love her most.

The big takeaway here is not that every patient should be treated one way, but that far too often in the hospital we do not have the honest, hard conversation about what the patient truly wants. We fail to lay out the prognosis, the workup that would be required, and the implications for their life if they pursue that route. The patient then ends up having multiple procedures and an extended hospital stay that could have been avoided if we would have started the conversation earlier. I have found that many patients have very different goals of care than I would have expected once they have all the information available to them. We do our patients a disservice when we do not advocate for what they desire even if in some cases that means allowing our patients to die comfortably at home.

Dr. DeMarco is from Charleston, SC. He received his undergraduate degree from the University of South Carolina in exercise science. He completed his medical education at the Medical University of South Carolina. His medical interests include lifestyle medicine, sports medicine, underserved populations, mindfulness and tropical medicine. In his free time, he enjoys running, hiking, skiing, spikeball, soccer, and exploring national parks with his wife. He chose the University of Utah because of the unique blend of university and community hospital training, amazing faculty, and world-class opportunities to pursue passions within medicine while also enjoying some of the most beautiful scenery in the world.

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